It’s been nearly 4 years since I last updated Lily’s site. It’s hard to count the numbers of hurdles and milestones and put them into a single post. So much has transpired over the last four years. So many changes for Lily and for us. She has grown and blossomed into a beautiful young lady who continues to bring us joy every day without ever giving up. Her journey has been long and hard but we continue to face those hurdles while still managing to find a little joy in the everyday.
I last left the story where we were debating the possibility of Lily receiving her second baclofen pump, well that did not happen. Instead we were able to control her spasticity with oral medication. Having the baclofen pump push its way out and getting infected turned out to be a huge blessing in disguise.
At the time of my last post we were also planning on taking her off continuous formula feed— this took several months but I’m proud to say that she gets only receives fresh nutrient-rich food that I or our caregiver makes from scratch daily, keeping her in excellent health. Since taking Lily off formula we were able to remove all her G.I meds as she no longer struggles with bloating, indigestion, spitting up or constipation. I can’t emphasize enough what a healthy difference it makes to switch from bottled formula to a diet rich in plant based nutrients.
Over the past four years Lily has endured two major surgeries, a broken bone, followed by extensive rehabilitation. Late 2014 we discovered Lily’s spine was developing scoliosis. It was unclear whether she was predisposed to developing scoliosis, but we do know is that wheelchair bound wasn’t helping.
In April 2015 she had a full spinal fusion the entire length of her spine including stabilizing screws in her pelvis. This was a very difficult decision given the complexity of the procedure and the fact that there is no record of any other other child with CPVT enduring such an extreme and long surgery. After a lot of soul searching we decided to work with one of the top orthopedic surgeons at Children’s Hospital Los Angeles, Dr. Skaggs. He understood the motivation behind our decision was based on love and hope that Lily would be able to sit or stand once again and not be confined to the space of a bed.
The surgery was a success and she experienced zero cardiac events during or after surgery. After spending almost two weeks in the ICU she came home. It took her a year to fully recover from that procedure. She is able to sit comfortably and we still hope one day she will be able to return to her beloved hippotherapy with her equine friends.
Two years later in April 2017 what started with a dislocated right hip ended in another surgery called a double femur osteotomy. The recovery from this procedure proved to be more difficult and longer than her spinal fusion. Then a few months later around Thanksgiving we noticed Lily was experiencing pain when we carried her, we weren’t sure what was causing the discomfort. We suspected the pain was from the hip surgery but her limited ability to communicate left us guessing. So after a long weekend away we decided to drive straight to the hospital to try to get some answers and relief for Lily. We were shocked to learn she fractured her right femur. The broken bone required a short surgery to set and cast the leg. She wore her candy cane striped cast about month before removing it right before Christmas.
While Lily has spent the last year or so recovering from surgeries we’ve seen a decrease in the amount of therapy she receives (speech, occupational and physical.) Unfortunately the clinic that provided Lily with most of her therapies dropped our insurance provider, this meant finding a replacement. Sadly we discovered there just aren’t any clinics around us that work with kids who are recovering from brain injuries. We do continue with her Neuro-Ifrah therapy through a private therapist we met after Lily’s accident. We are grateful that she has been committed to Lily and our family. She has and continues to help Lily make tremendous progress.
Lily continues to regain strength and movement. She has maintained nearly complete range in her arms and legs. This is due to tireless efforts of stretching her throughout the day as well as wearing hand and foot braces. She is able to move all parts of her body, some more than others. She has really made major strides in regaining movement in her right arm. She has a device called a mobile arm support that attaches to her chair and holds up her arm. This allows her to move her arm freely back-and-forth. She uses these movements to make selections on her iPad, help with cooking, paint, etc. She has not regained her fine motor skills but we have devices that will help her adapt to holding objects.
Lily schooling involves a teacher that comes to our house Monday through Thursday for 90 minutes of instruction a day. During the last two years she has has made weekly visits to her middle school to help her transition back into the school setting. She started with a leadership class and added a cooking class which she particularly enjoyed. This was and continues to be a very positive experience for Lily. All of the staff and students are extremely welcoming and I am ever grateful for their support.
This fall Lily will be transitioning from homeschool to a special educational program in high school at my alma mater, Dana Hills, Go Dolphins! I am excited (and nervous) knowing this will is big change for everyone and possibly overwhelming for Lily (and myself.) Praying for strength and hope for best possible outcome.
We continue to go to our home away from home in Mammoth whenever possible. Skiing continues to be a great recreation for Lily and something our family can do together thanks to the wonderful people at Eastern Sierra Disabled Sports.
In summertime we love to fish, take long walks or listen to the wind through the tall pines as we soak in the spa on our deck.
At home we continue to take Lily on daily outings whether it’s walking through the neighborhood or on the beach trail or to the local outdoor mall. Soaking in the jacuzzi is a nightly ritual for us, too. It’s a special time to wind down from the day and a time for Lily to relax and feel her body move in the water. It’s also great family time.
Lily has grown significantly and changed so much over the years that it has increased our physical demand to care for her. Almost 2 years ago we were lucky enough to be able to add on to our existing home by building a special bedroom and bathroom for her. It is a magical room that has such a peaceful ‘Zen’ feeling about it, definitely everybody’s favorite room in the house. It has made caring for Lily easier especially by not having to carry her up and down the stairs and being able to bathe her in an open, roll-in shower.
There’s so much more to add — everything that has transpired and changed over the last four years. She continues to awaken, she continues to progress, she continues to learn, she continues to strive, she continues to believe, she continues to have faith, she continues to never give up.
She continues to bring us joy, to remind us to be grateful, to live each day to the fullest, to never take life for granted, to have compassion for others, to remain fath-filled, to try our best to be a better person and to appreciate the little things.
The day today is much like that day in 2012, we are forever grateful she survived the cardiac arrest event that warm Sunday afternoon.
My heart aches for her and what she endures — mentally and physically. My heart aches for her sister Charlotte who at almost 12 years old, has known here sister post-injury just as long as pre-injury. I know she misses her sister and I continue to pray she never forgets the memories of days gone by as “Silly-Lily.”
I’m grateful we have been able to love and care for Lily in our home. I don’t believe Jim, Charlotte and myself would be doing as well managing our new life, navigating our new world if we didn’t have the love and support of our friends, family, caregivers, teachers, neighbors, parish, schools and countless others.
Thank you for your continued prayers.